G-tube/peg users, support and advice :)

[fazsaeed]

helloooo
My son is going in for peg in 2 weeks.
What should I expect?
What experiences have you had?
How have your lo's coped?
My ds is 18 months.
Thanks

Ooo also anyone got them character gtube pads? That go under to help stop granulation skin? I've seen them from America but would like something closer
Thanks
Ps
Any advice, chat anything welcome
X

Hi faz
my son has had his button for 10 years so happy to help with any questions.

My ds was 3 when he had his and the op was done as an open op rather than endoscopically, (due to his other problems) and this does make the op a bigger deal; I'm sure someone with experience of having it done endoscopically will come along soon!

He coped with the actual device very well. The initial one had all the tube-y bits dangling from it and we thought there might be some attempts to fiddle, play with or pull it out so we made sure that he had clothing that stopped him - he was tiny for his age so was in all in one vests, babygro's in bed and acquired a collection of dungarees!

In terms of the site - yes there was some over granulation. His community nurse arranged for our gp to put the recommended ointments on repeats so we could just get them and start using if we spotted any problems. We did have some instnces of infection - by and large these would be related to when other people were dealing withn his button - so I can remember a bout when he started nursery, another when he started school etc. Cavilon is a useful barrier cream to put round to help prevent this.

I have also learned how to change his buttons myself - it's much easier than having to arrange for his community nurse to come in and do it.

Thanks. Do you give blended food or what the dietician have ordered?
Ive been in 2 minds about it but he needs it now.
He needs help with eating and I'm sure when he's eating the food is going onto his lungs.. He keeps getting chest infections. How do you handle days out etc?
X
Thank you x

We give him the formula from the dietitan, but he can eat as well (he just doesn't eat enough). I did think about doing a blended food diet, but watched a video clip of the "food" a mum was making and that seemed very strange to me (so sweet and savoury in one blend, with all sorts of oils); so we stayed with the prescribed feeds.

Days out used to be tricky - at one point he had all of his food and fluids via his tube and could only have small amounts as he was sick so much, it equated to either a feed or a water bolus every two hours which was a nightmare!

However we have fed in the parked car (and on the move as long as there is a person to sit next to him), even on the beach - you just need to improvise with what you do - nothing dangerous, but maybe stuff that a nuse wouldn't do!! . Bear in mind however that for an older child things are a bit different - at your sons age we were still sterilising everything and using boiled water for flushes; neither of which we have to do now.

These days he has one feed during the day - in the morning, but reasonably moveable in terms of timing and the rest overnight; again we know what he can tolerate so if it goes on a bit late, he can cope with a slightly higher pump speed.

There is a support group PINNT - not a huge amount on line unless you are a member (and can accress the forums) but there are a lot of people who can help - www.mumsnet.com/Talk/special_needs/1437360-G-tube-peg-users-support-and-advice

link didn't work as I pasted the worng thing

www.pinnt.com

Hi Faz. My DD has a gastro tube fitted at age 13. SHe had her op done endoscopically and we went prepared to stay in hospital for a few days, but she actually came home on the same day as the op (which is amazing as she has loads of complex needs/health issues.
We have always fed pre prepared specialist liquid food prescribed by the dietician. DD is fed a continuous slow feed during the day (after bad experience of night feeding when she had an ng tube before the gastro.) She has a portable pump which fits into a ruck sack and hangs on the back of her wheelchair - so for us, feeding when out and about is much easier than it was when she was fed orally.
She had her g-tube replaced after 2 years with a Mic-key button, again by day surgery. In spite of having reflux, we have managed to escape having the much more complicated fundoplication procedure, which is sometimes needed by children with severe reflux.
We don't have problems with DD trying to pull tubes as she does not fiddle but there are various tyoes of pyjamas/vests available which prevent children getting at the tube, whilst allowing access for connection.

Thank you for that link
I will check it out tonight!
Bigbluebus what type of clothes do you mean??
He needs a new wardrobe soon so it's best if I buy that will be helpful with feeding.

X

Oooo
How are everyone's dc?
( just trying to be friendly lol)
X

We just found things like all in ones and dungarees hepful at first, kept fingers away but also kept the tubes in place while he wasn't feeding. Now ds just wears the normal teenage clothes as he doesn't fiddle either.
He's on a school trip at the moment, prbably having the time of his life!

They were going to do this last month but held back as the nurses were being bitches at the hops saying I wouldn't feed him :|
I was given conflicting advice and i went on the advice of the feeding specialist. So at that time I bought te half vests but I can now see that they will be problematic as it's 100% certain he will try in the first few days to Pull it out.
Thanks for your help.
Is your ds still tube fed? Can he have other foods too?
Awww That sounds like he's having a good time
X

faz Racketys sell popper vests in bigger sizes and a 'joey' vest which has the poppers across the front so that you can get easy access to the g-tube but it is less accessible for your DS. It depends on your DS's ability and whether he is toilet trained or not (popper vest would be a nightmare if he needs to use the toilet, but great if still in nappies. )
We never bothered with special vests for DD as she doesn't fiddle with or pull the tube - so never an issue for us.
www.disabled-clothing.co.uk/vests-children-c-102.html

Sorry Faz just re-read your OP and see your DS is only 18 mths so unlikely to be toilet trained!!!!!

Hi there. DGS is 3.5 and has just had a PEG fitted. He was in hospital 4 days and it was done endoscopically. It was sore for a few days and he was miserable with the drip going and nil by mouth. But after a couple of days the feed was started and he could eat again. Of course when he got home he developed a cold so snot everywhere held things up!

Its now over 2 weeks ago and he seems very unbothered by it. Its healing well. He doesnt pull at it, which we are surprised about as he could if he wanted to. He has a 500 cal/500 ml feed overnight, eats normally during the day, with top ups to increase his calories and fluids.

He never had issues with aspiration or chest infections, just a very poor eater (he has CP). We did try supplements, high fat foods, cream etc etc but he seems to have a weight limiter built in. Our hope is we can fatten him up so his 'limiter' is set higher. He was born 4 1/2 lbs and has stayed constantly below the lowest weight line, despite 9-25th centile for height. Our hope is we can match his height and weight eventually so it can come out.

It is currently a tube dangling down which we fix to his waistband but I am looking at protective vests or some such. Its a bit of a worry for nursery staff forgetting and hurting him when picking him up...will also look at the pinnt site.

we've recently had a g tube done and i was 100 % certain my son would pull it out or fiddle with it - he hasn't gone anyway near it and hates it being touched. We bought all the vests etc for this reason and now find we don't need them ! i think you are also talking about button buddies - if you google it you will find them - but they are really simple to make if you know anyone who can sew ! i like them and they keep the site cleaner and are supposed to help with over granulation. i think the blended diet is used more with kids with buttons rather than pegs as the tubes can easily get blocked and the button can be replaced easily if blocked whereas the peg requires another op to be replaced !

Ok so what's a bolus feed?
I know they will tell me at hosp but I like to know my stuff lol
X
Thanks for the links
I might just make a lil pocket in his long vests!
X

Sneezecakes that sounds like a plan they might advise for ds as he's a poor eater due to severe reflux and he has severe food aversion.

Twilight does your ds not scream before having a feed? I'm also scared he won't let me go near him to feed
X
Thanks
X

hi, umm no but hes 13 and doesn't get hungry; they take their time to get used to it but our tube was so long i didn't need to get that close !!! lol you'll be fine - i had all these questions and within hours i was happy with what to do - a bolus feed is when you use a syringe and just take the plunger out, attached it to the end of the peg and pour the feed in and it just falls in via gravity.

How did everyone manage with their dc after the op?
X
How's everyone doing today? X

DGS is back at nursery tomorrow so hope they are careful!!! Yes the tube is long around 20 cm and secured with tape, so easy to do bolus feeds during the day to top him up. Also he is so well hydrated! Used to only drink 2 cups of water at day...water! Would gag on milk or any milky drink even chocolate! He also had a bit of a food aversion and would retch at the sight of his dinner. The PEG has taken away the anxiety factor with feeding, we dont have to practically force feed him, so hopefully food can be more relaxed and enjoyable, so far so good!

There is a PEG nurse that comes to the house for any problems and gave dexamethasone cream when the wound got red - it really helped.

After the op (his mum stayed and dad too the first night (told them he would sleep in his car!) so they gave him a bed! Took a portable dvd player and had wall to wall charlie bear and baby jake etc. Regular calpol and ibuprofen was given, lots of cuddles and he was actually fine. He is totally blase about having feeds set up and boluses, which surprises us as he is always a bit freaked by anything new

Awww bless. So they could feed straight away through peg? Did it leak?
I'm just so worried I'm going for the wrong decision but he needs it. He's eating very little normal food and the rest is baby food through syringe like meds.

He's refusing this way too :(
X
Thanks everyone x

I think the PEG tube was not used for 24 hours or so, and he had to have intravenous fluids. No didnt leak and not so far!

tbh we fought against it for 18 months or so and were happy if we could keep his weight slowly increasing, even though it was hovering below the bottom line. Trouble is his height was going up and up, hence he looked like a starvation victim In the end nursery started and it was bug after bug, fevers, snotty, vomiting and that sent his weight down, and enough was enough. The stress was too much. I think when you get to the stage you are at you just accept it. Every parent seems to go through what we went through and what you are going through, and are glad they went ahead in the end.

We now wish we had gone with it a year sooner, but it could have gone the other way and his weight could have increased naturally as he does eat, so it was a difficult decision and we are glad we gave it a try.

Back at nursery today, and they said he feels a lot stronger in his sitting etc, and his ribs have disappeared already, maybe even getting cheeks??!! (bum and face)! He needs the extra calories for energy and to function, his sleeping is loads better too!

DGS Just weighed and has put on 2 lbs in 3 weeks! As much as a bag of sugar!

I got ds weighed today and he has lost a pound in a week.
I wish I lost that in a week lol.
The lady who weighed him used to wok with kids with gtubes and pegs.
She Said it's not forever
He needs building up and it will help him
Stay hydrated too.
I'm
Dreading trying to give him pudding.
Hes been sick today so his breakfast and dinner both came out.
I'm ok with it but as he had septicimea my parents seem to think it's a one way ticket back to the hosp with that problem.
:(

Thanks guys

Ive ordered some gtube pads from America lol.
A bit of retail therapy!
X

Its horrible to begin with, and very stressful but after a few weeks I'm sure you will know it was the right thing to do. DGS was forever gagging and vomiting back his dinner, and we'd have to get more to feed him again - awful for everyone. Now it doesnt matter, he has bolus feeds. As you say its not forever, and that is where we hope to be eventually. All the angst has gone, even when he's poorly we can still feed him. Being chunkier makes them better able to withstand illness too

That's what I saying.
While I was getting ds weighed there was 7lb difference between my ds and a 14 week old baby.
:|
For so long I was told that having a few bites every meal time is enough for him as he's a lively child and never looked too ill infront of a dr.
In my area there are 2 other mums with young dc who have reflux.
I will make sure that get the care they need. No being fobbed off my drs.
It's just soo hard.
I feel bad 'forcing him to eat' but if he doesn't eat anything at all.
Hes just banged his head while playing with me so I feel even more guilty :(
I just want to get it over and done with
No more waiting just get used to it so we can help him.
I also have health problems and I've put my health on hold but I'm
In loads of pain but Theres no way I can go and get myself sorted but it's hard sitting around in all this pain.
:(

Its always the way, your child comes first, but you must look after yourself too. DGS went back to nursery yesterday and today is vomiting massively. Otherwise he's quite chirpy, but DD is just not bothered as she can put fluids through the tube and slowly build him up again. Think it was just a little bug, as he's keeping everything down now, so only a few hours but she has virtually had to wash the whole house!

Look forward to no longer forcing DS to eat and seeing him put on weight and get more energetic. The waiting is awful but recovery is pretty quick